Merry Christmas

We hope everyone had a great Christmas. Ours was great! We had a wonderful time with the family full of lots of laughter. We did Christmas Eve at my mom's house and then Christmas day was at our house.
It is so bad when the family gets together because Stephen and his brother Keith always start trouble. The two of them together are hilarious! The night was spent with the four adult siblings-me, Stephen, Keith and his wife Marty, totally not behaving. We did everything we tell our children not to do (won't go into detail of this.) It was funny watching our children watch the adult siblings acting out. At one point Marty's mom caught her in the act which resulted in her getting the "mother's look." I am happy to say that I never got caught! :) Anyway, pictures are below....

Our Christmas tree...
Nicholas' tree. We get him a special ornament every year. The kids pick one out and then we do. This year he got a big "N" from the kids and "Gift from God" from us.

At mom's house. Sweet...

Megan's face says it all!!! The kids got a net book from Papaw. Yes, I am serious.

Nicholas is our special present. Who needs anything else? Although he is not thrilled with the bow on his head :)

Abby Sutton signed a CD for Megan with a sweet note inside. Megan was shocked. She LOVES Abby so this was the best present ever for her. Abby is a friend from church and recently released her own CD. It is AWESOME! Abby has the voice of an angel. Everyone go buy one!!!

A little break from opening presents before the guests arrive. Too sweet!

The family watching the Twister Game going on. I was winning at this point until Stephen pushed me down-cheater!

Megan kept winning the game so Uncle Keith decided to tackle her!

Megan is learning to play the piano. She debuted her first little song for us. So proud of her! Thanks Thelma!

Nicholas update

Well usually when I start off with a "Nicholas Update" it tends to be bad news. Not this time. Since we started this blog to keep everyone updated on Nicholas I figured it was time to do that.

Nicholas is finally doing well. No illnesses as of right now and he has finally healed from his tonsillectomy (which by the way took a full 6-8 weeks!) We can't say that we see significant improvement. He still does not sleep through the night. He will maybe go 3-4 hours at a time and then stay up for 2-3 hours. This leaves me with permanent dark circles, bags under the eyes and lots of wrinkles!!!! Plus, I have noticed gray hair recently! Totally not cool! Anyway, he does not cough as much which is wonderful. He would constantly have to cough up secretions. And he is not as noisy as he used to be. Those are all pluses but not in the area of sleep.

The ENT was pleased with his progress and has vowed to leave him alone for a while. He did get Nicholas hooked up with a dentist (good luck with that!) and is trying to get Nicholas involved with a special clinic at Brenner. Okay, so my first reaction was "Great! Let's add more doctors to our long list and add more visits to Brenner." His reply was "Guys, this is Nicholas' second home-get used to it." Brenner is a wonderful second home to have and we have been so, so blessed to have a team of doctors and nurses that love our son and want the absolute best for him. I would rather refrain from calling Brenner our second home though. Let's not go there!

So about this clinic...there is a special clinic at Brenner for children with neurological injury such as Nicholas. They are a team of physicians and therapists that help kids learn to eat and eat correctly. When Nicholas first came home three years ago, he had started with OT (occupational therapy) to specifically help him learn eat. He has a feeding tube in his belly where he receives all food and meds. Nicholas has lost all ability to eat and suck. He did really well and was close to a swallow study to see if he had reached the point where he could eat. Then the teething started. In his ability to cope with the pain of teething, he would no longer allow anyone near or in his mouth. That ended the swallow study.

Around a year ago, we started OT back up. He seemed to do well but had to start all over. Everything he learned was forgotten. Then one day his now previous OT said, "I do not feel like he will ever eat by mouth." At first I was so disappointed and wanted to cry but then I stopped. I truly believe that my son will eat something by mouth. He may never get rid of his feeding tube but he will have something by mouth. I refuse to give up on this. I look at my son and see and feel his determination. Aren't all things possible through Jesus Christ? Nicholas is living proof of that. Anyway, this left us stuck. We no longer had any support to help Nicholas further his ability to eat. The therapist had written him off. I was bummed. How can people just give up on these little kids and who can help when no one will? It broke my heart but I refused to let it go.

So who do I go to but our Brenner staff. First on the list was his ENT. After he had checked Nicholas out I asked him about Nicholas eating and told him the story. He had thought all along that Nicholas was receiving food by mouth!!! Yes!! This was encouraging. He was not pleased that they had given up on Nicholas and said he would get Nicholas enrolled in this clinic at Brenner-our second home :) Here they would work with Nicholas and help him develop the ability to eat by mouth. There are no guarantees but at least they have not given up hope with our son and will do everything they can to help him. With tears in my eyes I told his ENT "how can they just give up on him? Give him the chance to learn. How can anyone give up on a child without helping them to learn?" He said, "that is why we are here. We want to help Nicholas reach his fullest potential in the safest way possible." Amen!!

I am so excited. It takes around five months to get in this program. Nicholas will have more therapy, more visits to Brenner, more doctors but all to help him "reach his fullest potential." I have said it so many times but we have been so blessed to have our Brenner family that have done so much to help our son. All because they have the love and heart for these children and want to do everything they can to help them. The Lord has blessed us beyond measure!

Rudolph????

American Heart Walk...a little late

We did our Third Annual Heart Walk back in October. Yes, we are a little late with posting! The kids love doing this in honor of Nicholas. It is so neat to see their excitement every year to walk for their little brother. Every year it is freezing and we have to get up early to get to Tanglewood on time. Every year they get up with no complaints and smiles on their faces.

Some of Nicholas' nurses or girlfriends as the kids say.

Amanda wrote names of the heart kids and angels on her pants. Nicholas is on her left hip.

Sweet Jacob. Amber and Chad did this in honor and memory of their sweet little angel Jacob. Someday we will all meet again!

On the way home...he is out!! A busy morning with lots of kisses from his "girlfriends."

Disney on Ice 2010

Megan and I have been going to Disney on Ice for the past 6 years (she is now seven.) This year we brought Brandon as a surprise for him (Megan later got mad that he was interrupting our mother/daughter time.) Anyway, we had a great time together and now Brandon wants to be a part of our annual tradition.

Trying to fit all three of us in the picture.
Princess Megan.

Blurry Minnie-do you know how hard it is taking a picture of moving ice skaters with a camera phone???

Jasmine and Aladdin striking a pose.

Sorry it ended up being a rear picture-not intended.

Bye Bye Mickey...until next year!

Happy Thanksgiving from the Richardson's

We pray everyone had a wonderful Thanksgiving and that each of you realizes the blessings in your life. Appreciate your families, your friends, your spouses and children.
We have so many things to be thankful for...our Nicholas, my three other awesome children, our family, our friends that are family to us, our Brenner family, our church family, and the list goes on. Happy Thanksgiving to all. Let everyday be a "Thanksgiving to our Lord." My mom and Nicholas.

My sister in law's mom and Stephen's Aunt.

Brandon (begging to eat)

Brandon and Megan having enough of the pictures! Out of all of the desserts, Megan wanted a doughnut.

Quick Updates

I know...I know...it has been a while since we have blogged. We have been super busy, super sick and super tired!!!

Here are the quick updates for now....

Nicholas is finally getting better from his Oct 28th tonsillectomy. He has had a rough time of healing. As soon as his 10 day antibiotic was over he developed a double ear infection. HELLO!!! They said the surgery would reduce his chances for ear infections. The poor thing never even got them before! When the ear infections were diagnosed, they also found that his throat was still swollen and the scabs were still there. So...back on antibiotics and steroids. Over the weekend he has started to smile again. Very sweet and very encouraging. Please pray he remains well. He has had such a rough time.

Steve had a sinus infection. He is on antibiotics and healing.

Stephen David got impetigo. He is also on antibiotics and getting better.

Brandon just started getting impetigo. Started him on antibiotics to fix it.

Megan has a ear infection. The ENT was a bit concerned with the amount of fluid and frequency of ear infection with her. There is a slight chance she could have permanent hearing loss. They will test her hearing in six weeks and we will go from there (another prayer request, please)

And then me...while everyone was sick, I had something too. I just did not have time to get sick or realize that I was so it got worse. I ended up having a sinus infection, double ear infection and finally had one of my ear drums rupture. That HURTS!!!! I am on day 10 and it still hurts plus I cannot hear out of that ear. The doctor said today that the rupture looks better but it is still highly infected (thus the pain and loss of hearing) So... I am on new antibiotics and praying for healing SOON!

That is our update for now. When we are better we will join the land of blogging again!

By the way...the day we came home from the hospital with Nicholas we had a guest waiting for us at the PICU doors. It was sweet JuJu and Amber!! Her scan was clear of any cancer! Huge, Huge, Praise! We are so excited for them. Keep updated at Amber's blog and keep them in your prayers.

Nicholas is Home!

Nicholas was discharged today to the surprise of us all. He was doing very well and there was really nothing that the PICU was offering him that we couldn't give him at home. In addition, a case of H1N1 was admitted which scared Nicholas' surgeon enough to kick us out the door. Praise God and thank you again for your prayers.

Nicholas' Surgery

Nicholas had his Tonsilectomy surgery today which went great. The surgeon was surprised that his tonsils were actually larger than he had anticipated. However, the surgeon is now more convinced that we will see more positive results as a result of this surgery. Because of Nicholas' history, he will be staying in the PICU while he is hospitalized. We are just not sure how long we will be here.

I would like to offer a special THANK YOU to all of you that have been in prayer. We have received so many calls, text messages, emails, and facebook messages. We are very appreciative of your love and prayer support.

A day at the Dixie Classic Fair

We took the kids out of school early to attend the Dixie Classic Fair, an event which we had never been to. We spent more money and more time than we had planned but made memories that will last a lifetime.

Megan eating her favorite food on the planet

Stephen taking a break from his funnel cake

Brandon eating a turkey leg that was bigger than his own
Hey, look who we ran into at the fair!
Megan and Anna Ritchie rode every ride about 16 times
Nicholas is under there somewhere

Megan, Brandon, and Anna Ritchie

Chris taking his life in his own hands

Brandon's red and sore forehead...see video below and you'll see why

Poor video but the laugh factor is worth it! That would be Daddy laughing hysterically in the background

Why this picture?

I have had people ask my why I don't change the main picture of Nicholas on this blog. It was taken a little over two years ago. He has so many cute updated pictures but honestly I am not ready to change it yet and this is why...

During the summer months of my pregnancy with Nicholas, we hung out at the pool a lot. Steve's mom had cancer and it was progressing rapidly. Nicholas' birth and heart surgery was rapidly approaching. The pool time was our little get away. As I sat on the lounge chair watching the kids laugh and play with Steve in the pool, I couldn't help but imagine the next summer. The next summer when Nicholas would be with us and the heart surgery would be done. I would rub my belly and tell Nicholas all of the fun things we would do next summer. The cute little swimming trunks I would get him, the float he would sit in in the pool. I couldn't wait until we as a family would be together the next summer.

Fast forward to May 2007. Nicholas had coded and was on life support. We lived second by second, not minute by minute, but second by second not knowing if Nicholas would live. It was an emotional roller coaster that drained us. Nicholas had been pronounced brain dead by neurology. We were told if Nicholas came home he would be a vegetable. I refused to believe that and so did many of our nurses and doctors. I looked at my son who lay there with eyes wide open, not blinking, legs and arms stiff, and knew that my baby was in there. I refused to give up. I would fight for him. Nicholas would come home.

So...I went to Target. Enough was enough. I was going to buy my son swimming trunks, sun glasses, a sun hat, and a float for the pool. I talked to Nicholas last summer about going to the pool as a family and that was going to happen. I refused to be "drained" anymore. I gave it all to the Lord and finally was at peace. It was going to be okay. Then my cell phone rang. It was Steve who was with Nicholas at the hospital. "Lisa, you need to get here fast. They think Nicholas is having seizures and have rushed him for a CAT scan." If he was seizing it meant he was going downhill. Again, here we go again. I sat there in Target with his cute outfit in my arms and cried. Then I stopped. No, Nicholas would be okay. I am buying him his swimming trunks and taking them to him right now. And I did. I drove to the hospital and set his new swimming outfit out on his bed. I told him he was now ready to come home and go swimming with all of us.

And he did! Nicholas did not have a seizure that day. They are not sure what happened. He came home in June. That picture is of my baby boy the first time he went to the pool. I treasure that picture. We had many trips to the pool that summer but the picture is of his first time. So...that is why I keep that picture up. A reminder of the love of Jesus, the blessing he has given to us.

Sleep study to tonsillectomy

A few weeks ago Nicholas had a sleep study done to check for sleep apnea and to also check his brain waves for seizure activity. The poor guy was miserable. Would you be happy and sleep with all of that connected to you? Heartbreaking!

The good news is that they did not detect any seizure activity. He does have sleep apnea. A somewhat mild case but for Nicholas they do not like a mild case. They said in the average child they would let it go and retest in another year. Since Nicholas is a heart child they cannot ignore it. He had five episodes in a hour (sounds like a lot to me!) and his oxygen went down to 81% at one point. His average when he is asleep is 88. He did average 90-93 oxygen sats which was good for him. Anyway, all of that can put pressure on his heart and lungs. Even though his heart has been repaired we still have to watch for stress on it. Of course his lungs have never been great since his RSV episode two years ago.

So what to do? I am thinking oxygen at night. No not needed right now. Okay then what? We need to take out his tonsils and adenoids. My heart dropped (and of course I was by myself) Down Syndrome children tend to have bigger tongues and smaller airways. Also with his neurological injury he cannot control his airway and secretions like most children. Plus, large tonsils run in Stephen's family. Three strikes on that one!! By taking them out it will create more room for him and hopefully allow him to control his secretions and sleep better. Not 100% and maybe not even 50% better but hopefully better than he is now.

Okay so you are probably thinking that it is just tonsils and adenoids. M and B just went through it. No big deal, right? WRONG!!

These are the main points with having this surgery on Nicholas:

1. He has a low pain tolerance. When he is in pain, he shuts down.

2. This pain could lead to cardiac or respiratory arrest-again..for the 3rd time.

3. Nicholas coughs up his secretions. After surgery it will be too painful therefore he has a high risk of pneumonia.

4. If he becomes too traumatized by the pain from coughing he could potentially not do it again. If he does not cough them up, he will have a higher chance of lung illnesses which could lead to getting a trache.

5. There is a higher chance of him contracting some illness by being in the hospital (H1N1!!!!) from 2-10 days.

The surgery is scheduled for October 28th. I have my days where I just cry, thinking about all that could happen. Dumb, I know, but I am his mommy and I cannot erase the memories of the things that have happened. The times when we thought we had lost him. That scares me.

Then I have my days where I feel a huge peace knowing God is in control. Even in my moments of sadness for what Nicholas again has to go through, I can and do rest in the knowledge that the Lord will never leave my son. He will hold him and protect him through this surgery. Now, would you rather have me holding you through the surgery or the Lord??? Easy answer, isn't it?

It reminds me of the song "Praise you in this storm." Number 2 on our playlist. "Even though my heart is torn, I will praise you in this storm." Lord, even though my heart is torn I praise you. I praise you for every storm you have given us. I praise you for the one coming up in October. These storms have brought us closer to you and closer as a family. It is going to be hard. As a mother my heart aches but we "can do all things through Christ who gives me strength." Philippians 4:13

Poem: The Day I Became a Heart Mother

I love that scar. Nicholas' main "battle wound" as we call it. He has 20 of those battle wounds but that one is his main one. It reminds me of what Nicholas has gone through but mainly it is a daily reminder of the miracles our Lord has done in his life. A reminder of His never ending love. A reminder that "I can do all things through Christ who gives me strength." Philippians 4:13

I asked Stephen to read this poem the other day. With tears in his eyes, he said, "Wow, you wrote this about yourself and Nicholas?" No, I did not write that poem but it does tell of my life and every "heart" mother out there. People ask how my life is with Nicholas, how can we pray....read below and as you do say a prayer for every "heart" child and "heart" family out there.

The Day I Became a Heart Mother

One day my world came crashing down,

I'll never be the same.

They told me that my child was sick.

I thought, "am I to blame"?

I don't think I can handle this.

I am really not that strong.

It seemed my heart was breaking.

I have loved him for so long.

I will not give up on this child.

I will listen to your advice.

I will give my child any chance.

No matter what the price.

I will learn all that I need to help my child thrive.

I'll even use that feeding tube.

My child must survive!

Will he need a lot of therapy?

Will he gain the needed weight?

Please God, help me do this.

I will accept our fate.

When the monitors beep at night,

it serves as my reminder.

How many parents would love that sound.

Tomorrow I will be kinder.

As another Angel earns his wings,

I run to my child's bed.

I watch him sleep for quite a while.

I bend down and kiss his head.

I cry for the parents whose hearts have been broken.

I look to You wondering why?

Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.

My mind says savor each moment he's here,

but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.

From wishing for a good nights sleep, to learning every med.

From wondering, "will he be alright?", to watching him reach out his hands.

With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.

I look to them and smile.

You see my child is loved so much.

I would face ANY trial.

That scar I trace with my finger (It's the door to his beautiful heart).God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.

Now wise beyond her years.

For those who have angels in heaven,Our hearts share in all of your tears.

Every day I will try and remember,I was chosen for him (and no other).

I will always embrace that beautiful day.......When I became a "Heart Mother"

- Author Unknown

Thank you Lord for giving me the honor of being a Heart Mother. Most of all, thank you for the blessing of being Nicholas' mommy-a blessing beyond measure-Lisa

Back to school....

These are pictures from the first day of school. Stephen started fifth grade, Megan started second and little B started kindergarten. I cannot believe they are all three in the same school this year. They grow way too fast!

Beach trip 2009

We are still here!!! Sorry for the lack of blog updates. Things have been busy. I was talking to a friend at church today about the blog(Lori-see I told you I would mention your name) and I realized it has been a while. I don't think to write about everyday happenings so I am sure many of you wonder how we are doing.

We are doing good! We just got back from the beach and had a great time. It was good to get away and enjoy just the six of us together-alone. Below are pictures of our trip. We've got decisions to make about Nicholas but I will save that for another blog!

Me and my B.

Check out Nicholas' hair. I think his hair went into shock when he touched the water.

Brandon fell asleep inside his pillow case.

Megan and Brandon's personalities are evident in this picture. Take a guess by their facial expression and poses! Miss Princess and class clown!

The sun wore him out.

Nicholas enjoys the pool. He kept smiling but we couldn't get it on camera.

Okay..I know I have four kids but when I look at the picture-WOW! I have FOUR kids. It doesn't seem like a lot until I saw the picture.

The HIPPO! A massive, bouncy, water slide. Yes, I did go on it too!

Sorry, couldn't resist taking this picture. It is on the bathroom of our favorite restaurant-The Provision Company.

Nice and relaxed..isn't he adorable?